UPDATE . . . THANK YOU!
With the help of our lovely customers we’ve raised the money needed to help Frankie get to Serbia for Stem Cell therapy!.
Over the next 4 weeks, Hot Spring World will be donating £50 for every Hot Tub or Endless Pool sold.
I started showing symptoms of Friedreich’s Ataxia at 18 months and was misdiagnosed several times before being properly diagnosed at 5 years old.
I was walking with a walking stick by age 8, a frame by 10 and, despite my reluctance, moved to a manual wheelchair at around 13 years old.
Now 23 years old, and in spite of the challenges I face in everyday life, I have moved into my own property and still manage to keep a smile on my face every day!
Successful drugs trial, but not on the NHS
Last year I took part in a study to understand the effectiveness of a stem cell inducing drug. The results came back positive, but I have to wait 2 years before this treatment is funded by the NHS!
Opportunity abroad for Stem cell therapy
This is why I have made the decision to go to Serbia at the end of September to repeat this treatment. Since my disease is progressive and I would like to do this whilst I still can! Life expectancy for those with Ataxia isn’t very long. This treatment could help slow down the progression of the disease.
We will also be selling our HSW ducks for £5 (postage waived when purchased through our eShop), all proceeds to be donated.
Please support Frankie, visit his Just Giving page here.
What is Friedreich’s Ataxia?
Friedreich’s Ataxia is genetic neurological condition that causes problems with balance, co-ordination and speech. It is also linked to Scoliosis, heart disease and Diabetes. It is a progressive disease, the symptoms get worse over time.
As well as being severely life shortening, with an average life span of 35 years, Ataxia can leave sufferers completely dependent on others for their needs.
Over 10,000 adults and children in the UK have Ataxia. There is currently no cure.